I have a son named Liam. He is 2 years old and good with a soccer ball. He adores his big sister, and hummus. He makes us laugh when he does “a Mona Lisa Face,” and he happens to have Down syndrome (DS for the rest of this writing).
The rare times I was asked by people after Liam was born about anything related to DS was usually if I knew before he was born. The answer is no. It was a surprise, and I had never known anyone with DS before, so the learning curve has been steep. But here I am two years later with an amazing kid, and I want to tell people all I’ve learned about DS because the abortion rate for a prenatal diagnosis is very high, between 75 to 90 percent. Now, that is a personal choice and I firmly believe in every woman’s right to choose, but that means a lot of moms who perhaps felt scared of the diagnosis. Whether it is fear of the known or unknown things about DS, I don’t know.
The fears I had at the beginning have turned into worries, no longer fears, but I am a worrier in general. Would he have a girlfriend? Would he go to normal school? Would he drive? Always live at home? Would he engage, or have an empty look in his eyes? But I am finding that Liam is indeed very engaged. He is shy around others often, but a funny and lively guy. He loves books and having dance parties to Lady Gaga before bed. He will have romantic feelings, have a job, quite probably live on his own. Recently I read about a young man who did get a driver’s license, though this is uncommon, and a man who was recently the first in Spain to get a normal college degree.
Facts: Around half of babies like Liam have heart problems and need surgery. Hearing loss is common. Low muscle tone is the big challenge. Thyroid issues, autism, celiac disease, leukemia, and early onset Alzheimer’s are all more common than in the typical population.
So I have a 2 year old and I am already thinking way ahead into the future: how to offset decline in memory and cognition with nutrition and supplements, his financial future if we were to die before him. What needs to be put into place if, when he turns 18, we feel he isn’t the best judge of financial and health matters.
But for now, when he does typical 2-year-old things, I am thrilled. When he started using a pincer grasp for the first time to pick up old food from the kitchen floor, I said “No!” But inside, I was shouting “Yes!” It scared me when I heard that some kids didn’t potty train until 6 to 7 years old, so the fact that we are starting now is just friggin’ awesome. Just as with any group of people, someone might be strong in some areas and weaker in others. Not everyone is valedictorian of his or her class. There is a catch phrase common in the DS community: “We are more alike than different.”
Here’s what I have learned: Having high expectations is absolutely and vitally necessary. We will never let his diagnosis be an excuse for not trying our hardest at things. We will raise him in the same way as his sister. He will be bilingual and well-travelled. We will help him delve into and develop his passion. I read about a man in Arizona with his own restaurant and a woman with an Internet cooking show. I cling to these stories.
So, now that you have read all this, can’t you imagine how much it hurts when I hear someone say, “I can’t believe I did that! That was so retarded!”? Or “Don’t be a retard!” Simply put, the “R” word is offensive and hurtful, and, as it is often used, meant to be derogatory. I hear it now, and it makes me feel ill. It’s a type of ill feeling I’ve never felt before, and it hurts because someone could use it referring to my son. I panic, wondering if it will be said to him at school or somewhere else in the future, and I won’t be around. My baby. It hurts me, my son, and all his friends and family. It hurts a lot people. And I feel pretty horribly that I never thought about it too much before I had a son with a developmental disability.
“Spread the Word to End the Word” is a campaign I hear a lot about now, but I wonder if someone outside of the special needs community has. So allow me to tell you about it. It means: Be proactive in not using the “R” word and reminding others not to use it. There are a lot of words that have fallen out of use, or out of the politically correct realm. We all need to watch our language every day, and also use People First Language, which means putting the person first before the disability. So I say, “I have a son who has Down syndrome,” instead of “I have a Down’s son.” I am trying to see the person first before making generalizations based on some labels that could be applied to them.
So what to do when you hear this hurtful word? If you, like me, always think of the perfect comeback 10 minutes too late, you could say something like “You know, I’ve realized that that word is hurtful to a lot of people so I have stopped using it” when you hear it said somewhere, or see it on your Facebook feed. Do a search in YouTube for Spread the Word to End the Word. You will find some amazing videos. Watch a couple. Share them. And remember that yes, we are more alike than different. We all want to be loved, respected, and given the chance to reach our full potential.
Sara McGrath is a teacher, an artist, and a mom to two fabulous kids. She is bilingual and can walk on stilts. She also works at Parents Helping Parents, a family resource center offering support to families of children with special needs. She can be reached through PHP at php@ucp-slo.org. Send comments to the executive editor at rmiller@santamariasun.com.
This article appears in Mar 13-20, 2014.